Help with Sinuses. Recommendations needed to break up sinus junk!

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TheSaltyOne

Guest
Hi guys,

Does anyone have GOOD recommendations on how to break up sinus mucus/junk? Here is my situation.. I've had 4 sinus surgeries now, 2 clean outs and 2 drilling, and my sinuses STILL get blocked! When I say blocked, what I'm talking about is I literally have sinus pressure headaches every day, some days ibuprofen, tylenol, mucinex, and sudafed dont even take care of it.

I do sinus rinses 2-3 times a day using distilled water, essential oils, 1 tablespoon of pickling salt, and .5 tablespoon of baking soda. I've used essential oils on outside of skin to help relieve pain and pressure but nothing majorly helps. I occasionally will have times where I get a lot of junk out doing sinus rinses. I can feel extra pressure at some point, then will sniff/snort a lot, rinse, and will get pea size pale green and/or dark tan chunks out. Of course after this, my pain is relieved and I feel better but it is annoying that this hurts so bad and gets built up so much.

So my question is.. does anyone know any good and effective ways to break that crap up better so that it wont get built up so much and be so hard to get out?

Thanks to any suggestions!
 

ethan508

New member
Have you tried a nasal spray like Flonase? That helps me a little (but my sinus problems don't sound quite so bad).
 
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TheSaltyOne

Guest
Yes I should have mentioned I do use flonase twice a day as well.
 

triples15

Super Moderator
Hi SaltyOne,

Sorry your dang sinuses give you so much trouble. :( I have a couple ideas...

What do you currently use for sinus rinses? I ask because I use a Waterpik (yes, the water flossers for teeth) with a special attachment that my ENT gives to patients. It has a lot of pressure and works a million times better for me that the Neilmed bottle, or Netipot. I get so much junk out it is absolutely amazing (and disgusting)!

The other thing I have done in the past is used tobramycin in my sinus rinses. It seemed to help a lot.

The other thing is that I've also have many sinus surgeries. The last two surgeries I've had, my doc used packing soaked in tobramycin during healing. He says he thinks that really helps A LOT in regards to keeping them open and clear.

Not sure if any of these would offer you any relief, but wanted to mention them in case!!

Take care and I hope you find some relief soon!

Autumn 34 w/cf
 
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TheSaltyOne

Guest
Triples15 - Wow thanks for all the suggestions! I will definitely try those now. I too got fed up with using the gentle netipot things so I moved onto a syringe. I just fill it with 20 ml of the solution each time and squirt it up there with some force lol. I do wonder what the special attachment is... that sounds interesting. I am definitely starting the tobramycin in my sinus rinses tonight and I'll try calling my ent tomorrow to see if he's heard anything about an attachment for the Waterpik!

Thanks again!
 

Gammaw

Super Moderator
Hi Salty. AboveAll mentioned that my son had a procedure to remove polyps - again - but this time the ENT inserted a propel implant in hopes of decreasing the rate of recurrence. It did in fact delay recurrence but it didn't stop it. Instead of having them return within 3 months, it took about 8 months. Now that's a big improvement for us, but not as good as I wanted, obviously. They were indeed still small at the last visit, but his nose started bleeding recently - I'm sure it has to do with the aggravation to his sinuses that winter and its colds bring. He did however continue to culture MRSA in his nasal passages, so for those looking to eliminate that, I don't think it helped. Basically the propel implant is a steroid infused dissolvable cage that is inserted at the time of surgery to decrease the inflammation while your sinuses are healing. The steroids are released through the cage material which disintegrates over a 30 to 60 day time period. The disintegration was not uneventful, but painless. The cage can break apart as it dissolves and on more than one occasion, my son found a small piece in his throat which he would spit out. We also used a sinus atomizer during the following month with Tobi which had been specially formulated for the atomizer. I WOULD DEFINITELY NOT SIMPLY USED A TOBI VIAL DESIGNED FOR THE NEBULIZER. IT IS NOT FORMULATED FOR YOUR NOSE. Check with your ENT FIRST PLEASE. They can have a Tobi compounded for nasal rinse use if they feel that will help.
 
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Dank

Guest
For what it's worth to this conversation, I've had close to 20 sinus surgeries growing up, from ages 3-14. They removed bones in my nose to make surgery easier. I have not had any since. At some point my sinuses decided to drain on their own. Unfortunately that was not a permanent solution and now I will be scheduling an appt with an ENT today. I have tried sinus rinses but unfortunately my nose is mostly clear, it's the upper sinuses that the rinses don't really get to that ends up being the problem. I'm not sure how to best resolve, I've tried a bunch of different things over the years. Lately I've been extremely skeptical about any medications because I feel long term results are not accurately tested or determined properly. I will be chatting with the ENT and then attempting to discover a wholesome way to treat the sinuses based on that conversation. I recommend you do your research about the medications you are prescribed and determine the best solution for you or your child.
 
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TheSaltyOne

Guest
Gammaw - thanks for the tip!

dank - yep, same with me. The only sinuses that cause me problems are the frontal upper ones (forehead). So it's extremely hard to get those flushed out.
 

Beth F.

New member
Hi TheSaltyOne!
I've had similar issues with my sinuses, even though they've never been so bad to have surgery (it's definitely out there as an option though). I recently went to see an ENT who specializes in patients with CF, and there are some new treatment options. Years ago, he told me first to try adding a drop or two of Johnson's baby shampoo to the nasal rinse- distilled water and two packets- and that might help to make it a little easier for things to come out. My current treatment, which I started about 2 months ago but has helped tremendously and I experienced a relief in my symptoms within a day or two, is to do the hypertonic saline rinse, wait 20 minutes, and then rinse with a regular saline rinse with Bunesonide added. Budesonide is a steroid rinse, and it works a million times better than flonase. Flonase can only get into the first little bit, but rinsing gets it all up in there. My ENT actually did not want to prescribe me any antibiotic nasal rinses yet unless I have a really bad infection up there- sort of a last resort option. And if there's a choice, they def. don't want you doing antibiotic nasal rinses all the time. And lastly I would add to stop rinsing with essential oils. They could be adding to the inflammation more than helping it.
 
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momofsinus

Guest
Hi! My son has only one identified CF gene (full Ambry panel) but the clinic near us said carriers can have symptoms.Anyway, his main problem has been sinus issues. After 3 surgeries in 1 year, we found an ENT who
did monthly cleanings of his sinuses. The local spray anesthetic was used and he was awake as they did these
procedures. Although his situation is different, this might be something to consider. My son would understand
your discomfort and pain. Good luck!
 

triples15

Super Moderator
Hi! My son has only one identified CF gene (full Ambry panel) but the clinic near us said carriers can have symptoms.Anyway, his main problem has been sinus issues. After 3 surgeries in 1 year, we found an ENT who
did monthly cleanings of his sinuses. The local spray anesthetic was used and he was awake as they did these
procedures. Although his situation is different, this might be something to consider. My son would understand
your discomfort and pain. Good luck!


My ENT also does "mini cleanouts' in his office with lidocaine spray. Not to be too gross, but I was always amazed at the amount of crap that he got out. YUCK.

Also wanted to mention regarding the tobramycin, it was a prescription given to me by the ENT. It was in glass vials that I drew up with a syringe. I'm assuming it's the same tobramycin they use to compound IV tobramycin. When I switched insurance and they no longer covered that, I DID use the inhaled Tobi. That was also okayed by my ENT and he gave me the correct dosage to mix into a certain amount of water (which I can't recall or I would share). So these are definitely things you could talk to the ENT about.

Good luck (again)! :)

Autumn
 

JazzZyx

New member
Here is something that worked for me - at least from a year ago until now. I definitely DO NOT!!! recommend it, however,
I had a raging MRSA infection in my nasal passages and sinuses. Seems to have rooted out the thickened membranes and polyps so that now flonase works fairly well.
 

Gammaw

Super Moderator
Hi Jazz. I'm lost.....is there a link or something missing from your post? What helped you that you don't recommend? And why don't you recommend it? LOL! MRSA cleaned out your sinuses?! How did you ever get rid of it?!
 

erock77

Member
Only 20ml in your sinus rinse?? You need to do a lot more to flush it out. The standard Neilmed squeezebottle is 8oz, but I bought a 16oz online which makes a huge difference for me. One tip I've learned is if one nostril is clogged, and your head gets pressurized when you try squirting out through it from the other side, squirt Into the clogged nostril and it should flow easier and potentially flow something through your sinuses and out the other side. My ENT's have prescribed pulmicort, and much later .5ml tobra be mixed with my rinse. It's best to mix it in for just the last 1-2 squirts (w/ 16oz.). Have you had a sinus surgery yet? I've had 2 and things flow much more readily after they've broken down your sinus walls.
 
Hey, O Salty One, I don't have a lot of advice more than these folks. But I wanted to say that I had, probably 9 or 10 sinus surgeries between 14 and 25 years old, and then it just slowed down. I've only had three since I was 25, I think (15 years ago). That's probably small comfort, but I wanted you to know. Baby shampoo, extra oral and IV fluids, Flonase... all of those have helped me. Good luck, m'dear.
 
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TheSaltyOne

Guest
Thanks to everyone who responded! I'm not getting email saying anyone responded so I hadn't seen all this til now.
Just to answer a couple questions.. I do have tobi in vials but will call ent first. Also I do 20 ml flush at one time but I do about 7 of those in one "sinus flush" session if that makes more sense.
I also do have budesonide that I will try over the next couple of days. I used that a long time ago but I think before they got this bad so maybe it will be more effective now.
Finally, I switched some oils around tonight and got a lot out but I also opened a new Flonase bottle yesterday so not sure which one did the trick lol. I'll kee at it though.
Awesome to see all the help from you guys!!!
 

Gammaw

Super Moderator
SaltyOne . . . To ensure you're getting any posts, be sure you're logged in, then go to the top of the thread (not the top of the page) under Thread Tools and click on it. There should be a submenu for Subscribe To This Thread.

To ensure you get notifications of responses in other threads in which you have posted, again be sure you're logged in, go to the very top of the page and click on "Forum Actions" then click on the submenu for "General Settings". A bit down the middle you will see a section entitled "Messaging and Notification". There are several options there you can check to ensure receipt.

You may also want to check the email address you have in your settings to ensure your address is correct. Happy Posting!
 
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jamest

Guest
I use a water pik with a hose attachment thingy I bought online. It generates a lot of pressure, and you can thread the hose deep into your sinuses. It has basically completely stopped any sinus related health problems I had. I recommend it over anything else, especially if you've already had the extra openings drilled into your sinuses!
 
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TheSaltyOne

Guest
Gammaw - it gives me the option to "unsubscribe" so I guess I'm already subscribed but I don't get emails each time someone comments, only occasionally. Thanks for your help though!

Jamest - awesome! Could you provide a link to where I could find it online. I've seen the water pik but not sure about what the hose attachment is. Sounds beneficial though!
 
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